CCClub Newsletter #40

13 August 1997

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Re CCClub Newsletter #39 -- from Diane

Well, I'm no lawyer, but I'd be willing to bet my bottom dollar that Diana has good grounds for a suit against her boss! Sheesh!!!! That's all a person needs, on top of all their CC problems, is to have a boss like that!!!! I hope she gets a good lawyer and sues the pants off that jerk!!!!

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Colestipol question

Judy, in Bill's news item, he mentions colestipol. Is that a prescription drug or over-the-counter. I have never heard of it and would like a little more information before I talk with my doctor about it.

[Prescription, similar or identical to Cholestyramine (Questran)......Judy]

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CC/LC AND COLESTIPOL AND ALLERGIES -- Jill

Thanks to Bill! and his tip about taking meds/vits an hour before taking Colestipol (or, I assume, Metamucil), or taking the meds four hours after. I've been concerned about this, but have not been able to find out anything specific....

Also a tip to Diana about her possible allergies. I am pursuing this route myself, and it sounds very hopeful. I've located a "wholistic" doctor, a chiropractor who works with nutrition. She also has a homeopath in her practice. This is her theory for my immune/auto-immune problems and how they relate to my LC, diagnosed in June.

Briefly, in my case, she thinks that all the anti-inflammatories I took over the years caused "Leaky Gut Syndrome." As I understand it, she says that each time you take a NSAID, in order to be absorbed, it eats a small hole in the stomach. After years on them (as I was for my back, hip, etc etc), you develop many holes, and your "gut leaks." The immune system goes on hyper-alert as partially digested food leaks into the system; then, the immune system sends white cells to kill the "invaders." But the "invaders" can be milk, wheat, asparagus, you name it.... Soon the immune system gets so "heated up," an auto-immune response happens and it attacks the host--in my case, the white cells attack/attacked the colon.

I know this happened to me with dairy products. At Mayo, I tested as Lactose Intolerant, no surprise to me. Two years ago, I began to explode when I consumed any milk product. (Up til that time, I was a BIG milk drinker--3 to 4 glasses a day, plus one yogurt.) And had terrible, chronic sinus probs. A month after I quit milk, all the sinus problems disappeared, and have never returned.

There is evidently a way to test for food allergies using a blood sample. (A test not respected by the traditional medical establishment, by the way.) When I get back from a trip in September, I will get the results of this blood test, then go on a resricted, probably VERY restricted, ( diet to settle down the system; it should take 6 mo to a year. Some foods I'll perhaps be able to go back on, others not. (Mostly not, I guess, as the immune system has a long memory.) But, so be it. I'm willing to do what it takes to get well.

So...I'll keep you in touch, club members. Keep hoping! Keep healing!

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Intro from Peggy -- with untypical sumptoms

I have never written my story for this group and I have an appointment to have a reversal of my ostomy on Aug. 11th. I was dx. with CC in June of 1995 but my symptoms were not like many that I have read in the Newsletter.

My diarrhea became worse after my colonoscopy and on July 24th I was rushed to the hospital with terribe stomach pains and constipation. At the time I was on 16 tablets of Imodium a day. I had a naso-gastic tube inserted and a bariom swallow. They discovered I had a blockage at a site from a ceserarian section 25 years ago. When the surgeon got in there I had a massive pelvic infection and divertriculitls. I had to have an ostomy and 2 days later I almost died with a embolism. In all I was in the hospital and Rehab for 8 weeks. On Christmas day I had a reoccurence and had to have surgury again.

My colonoscopy said indicative of CC. Does anyone know what that means. I cannot ask either of the 2 drs. that cared for me - my primary and the gastro man since they are no longer my drs. If anyone has had anything like this or can tell me how CC differs from the others I would love to hear from you.

Thanks a lot for listening - if I hear from anyone I will tell you about my family. I am retired and 67 yrs old.

Thanks again, Peggy

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Yoga -- from Ann

I wish to thank you for your newsletters. Each one gives me a lot of info. I feel very blessed that my "problems" are not nearly as severe as all of the others I have read about. I searched for this newsgroup over a year ago when I had a major problem with diarrhea and gas.

I am a 45 year old woman in California. All of my life I have had problems with diarrhea and, if not constant "runs", at least five BM's daily, but it was almost unbearable a year ago. I was diagnosed with IBS about15 years ago.... and was re diagnosed again last year. I must admit, I am not very persistent with the doctors, since my problem is an on and off thing. The only thing I would like to add to all of your "cures" is yoga. Since beginning Yoga, my problem has eased considerably and, even when it is at its worst, somehow, yoga helps. My joint pain, attitude and general outlook on life has also really improved. I'm probably the most flexible woman my age I know....

Hope this helps.

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Lupus/Fibromyalgia/CC -- from Ann T.

I'm 33, live in N.C., but born in Germany, and have recently been diagnosed with CC about 1 month ago after a colonoscopy with biopsies was done. I'm married and have one dog, no children yet. I'm also an R.N. out on Disability due to my other two diseases also.

Now let me back up a minute, and tell you all how this mess all got started. I have been going to my primary Dr. for approx. 2 years trying to figure out why I was always catching every cold, virus sinus infection, and profound fatigue. She tested me for everything possible, but nothing showed up. Then I was sent to an Allergist and Ear, Nose, and Throat Dr. for more tests. Nothing showed up except that I am allergic to dust, mold cats, and grasses, and now take allergy shots weekly.

I was still getting sick all the time and still had the fatigue. Then 2 weeks after our honeymoon in Bermuda, I started to get this weird pain in my right elbow. My Dr. put me on an NSAID, but as soon as I got off of it, I got the pain again and could hardly move it all. So more blood work was done, and I was started on prednisone, which took the pain away and let me have function of my right arm. Well the bloodwork showed that I had a connective disease. So I was then sent to a Rheumatologist and over the last year have been treated for Lupus with a concurrent Fibromyalgia component. They treated me with NSAIDS and prednisone. Every time they try to get me off of the prednisone, my right arm will not function. I have been on many different meds. over the last year, some with horrible side effects. For those of you with Fibromyalgia that can't sleep at night and can't tolerate tricyclic anti-depressants; you may want to have your Dr. prescribe Klonopin .5mg. in a.m. and 1.0 mg. in p.m. This drug is normally used to treat seizures in much higher doses. It has done wonders for my sleep and irritability from the prednisone. It's used as one of the last resorts in Fibromyalgia.

To top it all off I was hospitalized while visiting my mother who has just been diagnosed with Polymyositis, in April '97, then one week before our first anniversary for chest pain and Shortness of breath. All I kept thinking was that I was too young to die! Well they came up that I had Pleuritis, Esophagitis, and possible inflammation of my coronary arteries which is why it felt like I was having a heart attack. Pleuritis is inflammation of the lining of your lungs and esoph. is inflammation of your esophagus. All of this can happen in Lupus, and they treat it with steroids. I had been short of breath for probably 2 months by now, and they sent me here and ther for more tests, and of course nothing kept showing up. The funny thing about this is the entire week before I was put in the hospital, I kept having very loose stools. I thought it was another side effect of one of my zillion medicines that I take. Then when they put me on high doses of steroids, no more loose stools.

I was dischared on 60mg. of Prednisone a day. I've been on the pred. anywhere from 5- 60mg. a day. What a rollercoaster ride this is! I was in the hospital 3 and a half days and then when I got back to my Dr., more tests were done and we started to wean my prednisone very slowly. When I got under 40mg. a day, here came the explosive liquid, watery, foul smelling diarrhea for about 6 weeks.

Of course the the stool specimen showed nothing and that's when I was referred to a GI Dr. for a colonoscopy. He told me that he saw a little colitis visually, but not too bad.Then the diagnosis of CC came from the biopsies he took. I take 2 Asacol three times a day, Lomotil 1 three times a day, (I keep trying to wean this down, but the diarhhea starts back up), and I'm still on the prednisone taper along with a bunch of other meds.for the Lupus and Fibromyalgia; I'm on 30 of Prednisone now. I really can't tell which medicine is helping me the most. I'm due to see my Dr. and Rheumatologist tommorrow; What are the chances of me ever seeing them on the same day again? I'll keep you all posted! Stress definitely has an impact on my Lupus/Fibromyalgia; it makes my symtoms worse as does cold, damp, rainy weather.

We have recently purchased a spa, which is supposed help with my Lupus/Fibromyalgia. I am currently also going through physical therapy for the same reasons. We even put a water filter on our faucet because the water tastes funny after it sits in a glass awhile. We figured it couldn't hurt. Maybe one of these days i'll get straighted out. I don't think stress plays a role in my CC.

Foods sometimes make it worse especially vegetables and fruits which my body is not absorbing very well now, and i seem to be somewhat lactose intolerant now.

The Dr. even put me out work once before due to job stress and was making my Lupus worse, he put out 2 weeks. I know I had all the triggering factors to set off my Lupus like sress from work and planning a wedding out of state, sinus infections by the tons, lots of antibiotics, and lots of UV rays from our honeymoon. I know this support group will help me get through this as my Lupus support group has gotten me this far, I have been in many of your embarasing situations, I know we can all make it if we support each other every day.

Thanks and take care all! Ann